sptcmom

Thanks Dawn. You're an angel. I appreciate your kind words. I beat myself up daily. I did spot the eye blinking at 22 mos and have been seeing specialists for everything with NO clue about Pandas. I mean language delays, air sucking tics, gross and fine motor regression, sensory issues, OCD etc etc- all have been treated as individual symptoms. At one point I thought he was probably Aspergers and kinda even accepted that DS was going to be quirky. As long as he was overall happy, making reasonable progress I was happy. The thing that kills me is I have not been an easy mother. When I was growing up, I was physically abused as a child almost daily. As a result, I have been a strict no-nonsense mom, loving but also the yelling and screaming type over the years with the occasional slap or two. I wish I could just kill myself and know I'm going straight to a bad place when I die. My poor son got yelled at so much. I thought if I kept him focused he would just snap out of it. The poor little guy is such a good kid overall and now I know so much more and am able to tell why he did all those weird things he got yelled at for over the years. It caused a lot of strain on the marriage too but thank God DH and I are both together still and trying to help our child thru this. DS is making fair progress in some areas after the ivig and abx. He's now able to swing a bat, catch a ball, run properly, jump properly, talks better... I am patiently waiting as the post ivig weeks go by.......

Thanks so much. That makes sense. If the regression is staying for a while I know its genuine slide back not just flipping. DS did have Myco and we did do Biaxin before IVIG and after too. The western blot for lyme was negative except band 41. I didnot know about Igenex testing and coinfections etc until after IVIG. Dr. K says to wait 12 weeks before drawing blood for new tests. DS also had leg pains and limping off and on for a year last year so I want to do lyme. The MRI shows abnormal bone marrow signals lumbar thru pelvis and femurs. Dr K says this is bone marrow hyperplasia due to strep autoimmune process but to get bone marrow biopsy anyways at 12 weeks post ivig. I wonder how does Lyme present itself? I know with the rages and aggression its supposed to me Myco most probably. Is there any indications like that for lyme? Also another thing I ask is when there is a real slide back- Do I try ABX, if it works we're fine or do I have to go back to IVIG because we did it before. I'm sorry I sound so dumb, its so confusing to me. DS has had Pandas since age of 22 mos as we found out ( he flipped back to eye blinking which started at 22 mos) and I've made SO many mistakes that I'm trying to be ocd about this now.

New Jersey Rosario Trifiletti is now in Ramsey NJ Friedenfeld- immunologist in Lambertville NJ- will follow Dr. K's protocol for IVIG and treats and does alternative medicine. Harumi Jyonouchi Immunologist and Pandas researcher at UMDNJ, Newark , NJ- treats and does IVIG Dr. K's protocol Agustin Legido at St Christopher's hosp in Philadelphia Josephine Elia Psychiatrist and researcher at CHOP

We are 5 weeks post IVIG with Dr. K. DS8.5 has been flipping the pages pretty bad some days, good other days- the usual. On the bad days its really scary as we visit the dark places again. I am very confused about when and how does one decide if a 2nd IVIG is needed? Dr K. says to wait and watch for 12 weeks and look for the conversion after that. How many have seen that conversion to a normal state after 1st IVIG? or at all? How long should I consider flare ups to be flipping and let them go as part of the post-IVIG process? If he does get a bonafide re-exposure should I just increase meds or go for another IVIG? or both? When should dilated pupils get better? Its just very nerve racking right now. The specialist doctors are sooooooooooooooooo hard to get a hold of and the exchange is so minimal/brief. This forum has been my life line for months. Am still struggling to find a sympathetic local doc who is accessible in times of dire need.

Its the medical liability insurance which is astronomical for any doc esp peds docs and sue one sue all tendencies rampant in pediatric practice esp. Peds specialists walk a fine line since there aren't a lot of human studies done on little ones . Severely affected children in any branch of medicine usually have parents willing to try a newer approach like us with Pandas and off label use IVIG etc. Thats why there are drug trials and good studies for medications. Medications are widely used because there is some kind of paperwork backing them up as also the pharmaceutical industry which is a behemoth. Peds or any specialist rarely follow old school "take an indepth history and try to diagnose" approach. It more like poke, test and probe the child to death and then arrive at a maybe diagnosis. Thats one thing I love about Dr. K and Dr T- very old school yet very modern in approach to treatment. Psch and neuro used to be a joint discipine. Things went south when the two wee seperated for some reason. Yes, mental illness has an enormous stigma attached but such is the society we live in.. Many docs are indeed unaware but many are just plain afraid of radical perceived approaches and making costly mistakes. I agree- thank God for the exceptions!

I'm happy to hear your son's doing well! I don't think I take in much iron at all, actually. I'm vegetarian & gluten-free. How do you make sure your son gets enough?? Thanks. We're still fighting Pandas at 5 weeks post IVIG but the leg and muscle symptoms are better thank the Lord.... Just high iron diet- enriched bread, pastas, cereals, lentils, beans, tuna, salmon, eggs, oysters, liver, beef, turkey, etc. Also eat high Vit C with high iron foods. Avoid calcium and vit A with high iron foods. I am vegan actually and my iron is fine due to lentils, beans, lots of citrus and enriched foods.

Thats weird. Insurance companies have a standard physician office visit procedure code. No big deal. Any decent insurance plan esp PPO will cover office visit even with a simple diagnosis code for headaches for crying out loud. The diagnosis code- ICD-9 code becomes imp when you want a procedure code or CPT code covered/paid for by your insurance plan. Based on your plan, some procedures can only be paired up/paid for with certain diagnosis codes. IVIG IS usually approved for with genuine immune deficiency as per bloodwork, polyneuritis, Guillian Barre syndrome etc.

Its very sad but your doctors are correct about their evidence based practice comments. I also teach Evidence based practice and Research Statistics to medical residents and doctoral students. The evidence has to be from Randomized controlled trials/ studies with large sample sizes and long term followup for a major invasive procedure like IVIG to get FDA approval. I mean a fully accredited, academic, ethical, consent obtained blinded RCT that says IVIG works for Pandas etc. That is truly lacking since all this is so new and controversial. The evidence is certainly not there. Similar to Sensory Integration Therapy which is so mainstream and so many many children benefit but insurance companies will have no part of it due to the lack of valid research evidence. I have to say though the latest American Occupational Therapy Asso Journal does have a wonderful high evidence study on vallidity of SI treatment. Hopefully soon for Pandas. I know Dr T and Dr. K are beyond brilliant and am sure are each working on it.

What would you like to do? IVIG? I spoke with Dr. Susan Swedo and her staff and she emailed me back a list of doctors in NY, NJ, PA area who will treat PANDAS. There so many more- Dr. Josephine Elia at CHOP, Dr. Harumi Jyonouchi at UMDNJ are both using IVIG high dose from what I've gathered. Theres another one in Philly I have info somewhere, and Dr. Friedenfeld in NJ is also using IVIG successfully willing to follow Dr. K's protocol. Dr. Jyonouchi was recommended by a very famous peds emergency med colleage of mine as also by Dr T. Also Dr. Legido at St Christopher's in Philly.

I can relate too. DS has had PANDAS for 6 years since age 2- we know that now. Sadly, he's always been delayed with stuff but minor to mod so he could kinda blend in but not fully since age 2. I've had to try extra hard all along as has he I'm sure when it came to talking in sentences, not being able to have abstract concepts, episodes of math and language decline, low muscle tone, bad handwriting, getting bad comments from teachers for sloppy work, poor in sports etc etc etc etc....... All this while having classmates and friends and neighbors who are in the gifted program, talk your ear off, analyze situations, excellent in sports, win trophies and they all rub it in for him too. One nasty little boy actually bullied DS to run when DS was in the middle of a leg spasm/pains flare up Poor poor little guy. Now with the diagnosis, IVIG, high dose ABX, biaxin for Myco- he's finally able to catch a ball YAY!, connect the baseball bat to the ball, double YAY! and overall gross and fine motor is better, tactile and visual sensory processing is better and abstract language, logical reasoning and inferences have kicked in, he's able to dress himself, make decisions, be stubborn be assertive- he's 8.5 years old and has suffered so long.... Hopefully by God's grace, all our children will be well and get a little bit of their lost childhood back and grow normally from now on.

I hope you do Dr. K's protocol. It seems to give the best results. GOODLUCK!

Excellent info, thanks! I will look it up.

There appears to be a low ferritin/iron connec tion with Pandas. Low iron can cause RLS, muscle spasms, " growing pains". I don't know of a narcolepsy connection though. I just read the earlier posts about the strep connection. Very interesting. BUT Dr K says iron supplements are contraindicated in Pandas patients as they cause incresed susceptibility to infections. He suggests we try to give DS a high iron diet instead with all the iron absorption precautions like not too much calcium, not too many carrots , vit C with high iron meal. DS is doing well. No more RLS for a while now.

ds has had all 4 prevar shots...and 8-12 strep infections...... did they cover it first go round or did you have to appeal.... No appeal. Cleared in two weeks by insurance. DS had 4 shots of prevnar too. None took. Poor guy. All it did was introduce live germs. Who knew. He's had Pandas for 6 years. Each episode/flareup was different and mimicked common childhood illnesses- thats what happens often Dr .K told us.

likewise for us too. We did the Prevnar or strep- pneumoccocal vaccine titers and my 8 year old came out totally almost non existent immuniyt on ALL bands. That quaified us for IVIG and insurance paid for it.

azithromycin is the same as zithromax/Z- pack. Augmentin 600 ES twice a day was what we started within the day when my son got a bad episode. It worked overnight with 50% reduction in symptoms. Then we found Mycoplasma and did two 10 day doses of Biaxin or also known as clarithromycin, one before IVIG and 2nd after IVIG.

Low ferritin can cause restless legs, leg muscle spasms "growing pains" etc. Foods high in iron can easily be googled. Just google for foods high in heme iron or animal iron which is easily absorbed v/s vegetarian/elemental iron. beef, liver, turkey, enriched cereals, enriched bread, oysters, fish, shrimp, beans, lentils, enriched rice. I wasn't aware of Dr T's take on iron stores building up in the brain. I'll have to run that by my hematologist or research myself on Pubmed- sounds dangerous and would like to know more. Remember to eat vit C foods with iron rich foods to hasten the absorption of iron. Skip vit A foods like carrots which will impede iron absorption as will foods high in tannin like teas. Also high calcium in diet slows down iron absorption. Its a delicate balance. I try to avoid carrots and cheese/dairy with my hamburgers or any iron rich foods. I also make all my own food, no fast food or premade. DS had bone marrow signal issues all from areas around his growth plates in his legs and pelvis all of last year. I wrongly increased his calcium thinking he was having "growing pains". Poor guy. I had never heard of PANDAS. My son also had Vitiligo at 4 which subsided at 6. Autoimmune issues run in my husband's family unfortunately. MYCOPLASMA is a blood test for Mycoplasma pneumoniae IgG and IgM. My son had a 3 month long mystery cough in June 08. His quack allergist diagnosed him with mystery asthma, exercise induced asthma and we had him on nebulizer steroids and albuteraol twice a day for 1.5 years!! All it did was supress the mycoplasma and we thought he was doing well and has asthma. Aaargghh! Well, two weeks on Biaxin twice and now my son is asthma free because he had walking PNEUMONIA all along! Oh God! I'm so angry with so many specialists and at myself but atleast now this poor child has some relief.

we are 5 weeks post IVIG with Dr. K. The 1st 4 to 6 weeks are indeed ref to as suicide time for all involved. Its really hard to go thru the flipping of pages as Dr. K says. Hang in there. I know about the high dose 1.5gms/kg that its supposed to get better after 4 to 6 weeks of struggle.

I can have the lab fax them to me if you're having such a hard time. I wouldn't mind filling out the paperwork for Quest etc with my info from my clinic. I do that for all my patients who see specialists already. Specialists can be a pain. I feel sometimes they just want to squeeze another visit out of you financially speaking. I wish they would atleast share the info with you and most parents wouldn't mind a follow up visit to up their specialist's bank balance Jeez! Sorry its my pet peeve. Disrespecting parents of patients is a huge ethical issue for me. Until you have a child with major issues like PANDAS its very hard for any one, doctor, anyone, to really relate. Let me know if there is no other way out. Also, I now Quest has a HIPAA form release that you can fill out at the appt time and they will mail you the bloodwork home. I guess other labs must do the same. They all have to follow HIPAA regs. Jodie

I agree with checking out the peds neuro being Pandas friendly. It doesn't have to be a neuro. If its Pandas it can be an aware immunologist, pediatrician, psychiatrist even. There is a huge list of doctors state by state on this forums- can't recall the thread right now... I'm in NJ so if you're NJ, PA, NY, CT area I can help you. My son had very low Ferritin too! This is the FIRST I've heard of someone else with the Ferritin connection. Ferritin is an acute phase reactant just like ESR (sed rate) and is usually lower than what appears on the results. My son had leg aches, pains, spasms limping etc all of last year and his Ferritin went down from 82 to 14 in 9 months! His sed rate was upper 50s to low 60s all year and no one could figure out what the heck was going on. His pelvic MRI came back with an irregular bone marrow signal which freaked us out but the hematologist said it was benigh it being symmetrical on both sides. whew! Anyhoo- started iron supplements and leg pains were gone, then he had a huge episode of Pandas- classic. I thought it was a seizure issue but his hematologist diagnosed him with Pandas within hours and we started Augmentin 600 ES BID and got overnight 50% reduction in tics and 25% in anxiety, OCD. Then we found elevated Mycoplasma and we did Biaxin whihc reduced his tics etc to 90% better titers. We saw Dr K in Chicago with my son 95% symptom free and he said to go ahead with the IVIG because the relapse could be horrendous. We did. We're now almost 5 weeks post IVIG with ups and downs going on (flipping the pages) right now. Sed rate is down to 20!! after a full year of high which indicates inflammation in the body (in my son's care it was in the brain!! aarrrghh!!) and his Ferritin is now 22. HOWEVER- Dr K says NO iron supplements for Pandas kids since it increases chance of infection. Just keep the diet high in iron naturally. Too much info sorry!, PM me or call me if you wish Regards- Jodie

My Ds also 8.5 with a sudden onset of classic pandas end of March. he writes songs too! Esp when anxious or thinks I'm mad or will be mad. Oh well. We are now about 5 weeks post IVIG with Dr. K. Dr K is available for email or phone consults as I'm sure u already found out in ur research. Sorry to hear about your DD. We're in NJ and we first went to Dr. T for bloodwork etc. Actually my son had leg aches, pains, muscle spasms, bone marrow signals etc on MRI. It was his peds hematologist who diagnosed him with Pandas and his pediatrician agreed and we started v. high dose abx right away and saw some relief almost overnight so we knew we're on the right track. What about doing the CamKinase? That should tell you if its Pandas or not. Also Dr. K's website has all the required diagnostic criteria for pandas that you could check out for your DD. regards- Jodie

Hi Ann The bentonite I use is just premixed liquid ready to use from Great Plains. I got it at Whole foods market but also available online.

Hi Everyone Have spoken to few of you but finally got a moment to register and speak online. This forum has been my lifeline for the last two months since my son was diagnosed with pandas. I am very grateful and will do anything and everything I can to help another family if I can. John's mom - we had IVIG with Dr. K four weeks ago. My son developed a headache first 12 hours after the 2nd day of ivig and which was controlled with Tylenol. Four hrs later he developed vomitting which was controlled by one 10mg dose of steroid. This lasted about 4 hours and we were done. The headaches ct for a couple weeks at home but were controlled with tylenol. If I recall correctly Dr. K was positive about these sideeffects. To him it meant that the IVIG has crossed the BBB and is knocking off the antigen antibody complexes, the toxins being released can cause side effects. I mean my son's hydration was perfect. He was massively hydrated by us a couple days before IVIG and then during IVIG by Dr. K as you know and also by us again. So hydration wasn't an issue with us I don't think. Also, bentonite clay has been very helpful with the headaches, tics etc for absorbing the toxins as my son was flipping the pages last few weeks (THANK YOU WENDY!!). The supplements that Dr. K suggests are very helpful too if followed diligently. The article I think refers to a child with low IgG levels and who reacted adversely to the entire IVIG itself. Dr K does his process so well, he is likely able to catch any flaw or reaction early in the game and change/modify course of action right away. If there is an innate allergic reaction to IVIG its an individual thing I assume. My son's headaches and vomitting were side effects per se. regards -Jodie